4.2

4.2 is the average number of years that people with Parkinson’s remain in employment following their diagnosis. Or so I learned today at a Parkinson’s Symposium. I had decided I need to educate myself and lose this ‘head in the sand’ attitude I seem to have adopted lately, so attending the symposium was the first baby steps towards doing that. I even asked a question, hence the opening sentence to this blog post. When I heard this statistic, my initial reaction was that my days of employment are suddenly numbered… I’m at 3 years post diagnosis… will I really only be employable for another year? Really?! That’s a very scary thought. Imagine having that sort of life sentence imposed upon you? You question your usefulness and your worth. But you can look at it another way! Average is simply that! Some people with Parkinson’s give up work at the point of diagnosis while others continue to work for many more years. I did my own research.
A UK-wide survey investigated the effect of Parkinson’s on employment and the critical factors that would help people with Parkinson’s remain in or re-enter employment. 327 people with Parkinson’s took part in a survey and a smaller number in one-to-one interviews. The study’s findings showed that:
 four out of five reported that Parkinson’s made work difficult for them
 six out of 10 respondents reported leaving work because of these difficulties
 minor adjustments could make work life easier, including flexible working hours,
specialist equipment and occupational therapy
 four out of 10 felt that they were supported by their employer
 respondents had worked an average of 4.7 years after diagnosis
 there was a variety of experiences with Access to Work, but a lack of awareness of the
scheme
Some smaller studies have also found people retire earlier when they have Parkinson’s. For example in one study the average retirement age was 55.8 years, compared to the then UK average of 62 years

It’s doesn’t make for great reading, does it?! Career longevity is not in my future. The struggle is already too real. The struggle to get ready for work before medication is effective. The struggle to physically and mentally do my job to a standard whereby people do not realise I’m struggling. The struggle to to have some semblance of a ‘normal’ life when I’m not at work. Work:Life balance is so important but so difficult to achieve in reality. Where do you draw the line? At what point do you say the struggle is not worth the reward anymore? And therein lies the rub! For people with Parkinson’s, working has so many benefits, to mental, physical and emotional well-being. It becomes a delicate balancing act. A job is so much more than a source of financial stability. A job brings with it social contact, conversation, problem solving, routine, time management, hope…

So the answer is not to be average! When have I ever been average at anything?! Below average maybe, but I’m definitely not average! I plan to smash your measly four and a bit years out of the water. I refuse to believe that I won’t be able to work in just over a year. You are only limited by the limits you choose to put on yourself! And if the time comes, and it will, when I have to give up midwifery, I will do something else that I can do… Can’t is not an option where I can make a choice. So I choose not to be average. Just because the average person does so, doesn’t mean I have to. Bring it on Parkinson’s!!! This is one battle I refuse to let you win.

Speaking of battles….. this

I am not average

I’m not the norm

I battle my demons

And ride the storm

Just to continue

To show up each day

The struggles I have

Hidden away

I love my job

It makes me whole

Parkinson’s won’t win

That’s not my goal

The friends I’ve made

Good times we share

I benefit so much

Knowing you care

I need to work

It’s part of me

To show other people

How great we can be

Despite Parkinson’s

Bringing us down

You can be brilliant

So, polish your crown

Show everyone

How great you can be

Your future’s not written

Create your own destiny!